My news and the absurdity of modern industrial medicine. Or, how I got diagnosed with pneumonia for the third time in less than a month. This is a long one.
I realize that being a cancer patient is a weirdly privileged position. Of course, fuck cancer, but the infrastructure and level of care is a cut above everything else. Most sick, chronically ill, and disabled people have to fight their way through the thicket of a medical system that is not designed for them, and certainly not designed to treat people as whole persons. Having now wound a very tangled path through 4 different medical institutions in the Boston area, things are getting a little messy but I feel like things are finally moving in the right direction. I still feel awful but we’re taking some steps to help with that as well.
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First the major good news. My new local oncologist was sick, but had a Zoom meeting with Carrie and I. Which was good because there was a LOT of information and I was honestly starting to feel desperate. I wish that somehow I could have started with her, but that’s not how medical care works. She took her time, really listened, and walked us through all of the possibilities. A full hour. I explained that I can be infinitely patient around testing and uncertainty but I was desperate for symptom control so I could enjoy life a little more in the meantime. She prescribed codeine to see if that will control my cough at night. I hate the wooly feeling from opiates but sleep is nice. She prescribed something for my throat in case I have thrush. And she set in motion a series of events that should result in the delivery of oxygen today.
So then there’s the cancer, and my lungs. Based on comparing recent CT scans, her interpretation is that the pattern of growth on in my lungs is probably not typical disease progression for my kind of cancer. I will spare you the possibilities for now because we should have more information soon and rainbow of possibility is incredibly broad, with each possibility meaning completely different things. I will be having a bronchoscopy, hopefully next week, which will let them look into my lungs, and take a biopsy of the tissue that appears to be behaving differently, and also make sure that the blood I sometimes cough up is from my Very Raw Throat and not deeper down.
This is the course of action also recommended by my Montreal oncologist as well, and they also both seem to think I will be switching cancer medications sooner rather than later. I am totally fine with this.
I am also now wearing a Zio heart monitor for the next two weeks. Most of the doctors I have seen seem to think that my low oxygen and breathing issues are causing the erratic heart rate and not the other way around, but at least there will be some more data. This involved a visit to a cardiologist I’d never seen before, about whom I have mixed feelings. She’s obviously very knowledgable, and in the end her plan worked, but it was a problematic interaction. Afterwards I asked Carrie if she felt I was being listened to, and she agreed that I was not. The caridiologist is not American but her approach was my stereotype of American medicine: trusts data over testimony; listens to other doctors, not patients; extremely aggressive in attitudes toward treatment (ie, surgery).
Because the oncologist could not see me in person, she wanted me to convey to the cardiologist to get some oxygen numbers so that the oncologist could order home oxygen for me. This led to a bizarre series of exchanges that escalated quickly:
“I don’t see a message from her in the system.”
I was the messenger.
“We don’t do that kind of testing, that’s pulmonology.” The oncologist knows that, she just needs some numbers since she couldn’t see me in person today. There is literally a pulse oximeter right there on the desk, and I also have one.
I convinced her to do a test, but it is the stupid walking test they do, where my blood oxygen sits at 92. If you have me raise my arms over my head to put on a sweatshirt, or walk up a small incline, or generally change the vertical position of my body, it drops into the 80s. If I lay down, it drops into the 80s and gets harder for me to breathe. I know this because I have been tracking my oxygen multiple times per day with a pulse oximeter. So despite my testimony and request to show her, we return to her office after the walking test and she says she can’t write a prescription for home oxygen. I proceed to put on my sweatshirt over my head, which has the predicted result, and put on my pulse oximeter to show her.
Things escalate quickly from there. She goes out, comes back in, says I need to go to the ER and be admitted to the hospital. The numbers, in case you are curious, are 92 resting and 87 with movement, which were the numbers that got me discharged from Newton-Wellesley hospital in September. She keeps saying “it’s not safe” for me not to be in the hospital without home oxygen, and that “in this country” (meaning the US) going to the ER is how you get things done.
There was then a lot of back and forth and phone calls here and there. The caridologist managed to get me sent down to another office to get the Zio thingy attached (#appnotavailableonCanadianAppStore), which to be fair to her, is some impressive institutional wrangling.
Carrie and I talk it over. I. do. not. fucking. want. to. be. admitted. with no real change to my condition and a weekend coming up, where nothing will happen in the hospital. But we decide to take the chance that going to the ER will expedite the oxygen delivery and head down there around 2pm. We’d arrived at cardiology at 11:30am.
The ER is your typical American urban ER. Lots of down and out people, crowding, not beautiful, prison-like toilet. TVs blaring in the waiting room. The admitting nurse looks at us funny when I say I’m here for oxygen and please ignore all of my other conditions. Reader, they did not ignore the other conditions. I got a full EKG, a chest x-ray, and lots of blood work. For the O2, I got the same stupid walking test, and the person who was administering it to me was not listening to me either. At least the PA overseeing my case admitted to us afterwards that the test is a bullshit racket for insurance.
The X-ray comes back, and it’s not quite the usual “sir, I’m sorry to say you have cancer” mirth but it’s good and cloudy as usual. A blood test comes back with elevated white blood cells. I’m still tapering off steroids, which elevates white blood cell count. But there’s another test that suggests there might be an infection. I explain that I have already been around this block twice. Nevertheless she persisted, and now I have been diagnosed with pneumonia for a third time since September, and have been given a third course of antibiotics.
With just a couple more rounds of antibiotics, I should soon qualify as USDA beef.
We were discharged at 5:30, which is fast for an ER but both of us were pretty crispy by then. On the way out the TV is blaring an ad for Wegovy, and as I trudge by with my cane I hear that I should not take Wegovy if I have thyroid cancer.
This morning, we received a call from a company that’s going to deliver home oxygen this afternoon. So it worked. The cardiologist was basically right.
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In other news, there are too many cooks in the kitchen. I’m concerned that some of my medications (prescribed by many, many doctors) are fighting one another, and worsening symptoms rather than relieving them. Again, I can be very patient with uncertainty but I want symptom relief in the meantime. I came up with a plan, pitched it to my primary care doctor, and she wrote back almost immediately with a couple small tweaks but basic agreement. So lots of changes are about to happen.
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Patient portal news: doctors have staff who filter their messages in the patient portal, so my message doesn’t always reach them because a staff member filters it out. Also, there are currently 15 conversations in my patient portal. 5 are with doctors about real stuff, 10 are about insurance.
America.